Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients



Stanley, Sarah ORCID: 0000-0002-7120-8680 and Nwosu, Amara Callistus ORCID: 0000-0003-0014-3741
(2021) Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients. AMRC Open Research, 3. p. 3.

Access the full-text of this item by clicking on the Open Access link.

Abstract

As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research. Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen. In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

Item Type: Article
Uncontrolled Keywords: Pain Research, Health Services, Clinical Research, Clinical Trials and Supportive Activities, Behavioral and Social Science, 7.2 End of life care, 7 Management of diseases and conditions, Generic health relevance, 3 Good Health and Well Being
Divisions: Faculty of Health and Life Sciences
Faculty of Health and Life Sciences > Institute of Systems, Molecular and Integrative Biology
Depositing User: Symplectic Admin
Date Deposited: 08 Jul 2021 09:15
Last Modified: 17 Mar 2024 11:07
DOI: 10.12688/amrcopenres.12961.1
Open Access URL: http://doi.org/10.12688/amrcopenres.12961.1
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3129264